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New member with multiple PE , intro and questions

Posted , 8 users are following.

Jimmyb5374
Jimmyb5374

Hi there , so I am new , 42 year old chap in the uk , with factor v Leiden and 11 days ago I went to a & e with chest and shoulder pains and shortness of breath , with a cough , and they basically didn't let me leave !! My d dimer score was in excess of 6000 and I was told I was to sit on my backside in hospital and be monitored , and even walking across the ward took my sp02 levels to 82 from 93 . Anyway make a long story short I am home now , just basically instructions on how and when to take my rivaroxeban and to go steady . I was signed off work , due to go back next Monday. A few questions as doctors just say everything is normal and leave you to it.

I have a dry coughwhich leaves me light headed and dizzy , asked doctors who said its to be looked at in 4 weeks unless it goes away?

I am quite heavy at 270lbs or 19 some odd stone, but this has made me think I must do something about it , but no idea if or what I can or should do?

Should I bother the doctor if I get any little chest or leg pain , or are there best things to look.for ?

I am reading through the forums , but any help would be great , when consultants say life threatening and lucky to be here you tend to freak out and want to do things right !!

Thanks

James

2 likes, 35 replies

35 Replies

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  • steve_1966
    steve_1966 Jimmyb5374

    Posted

    James, hats off for trying to go back to work so soon (it does seem like it may have been too early)

    my PE's (although Bilateral) do not appear to have been as large as yours. I'm not actually sure how big mine were but they were not found during X-rays and were only picked up with a CT scan. 

    It's now been six weeks since I collapsed and I still haven't gone back to work yet. I've started to feel like I should and could give it a go but my wife gave me some advice today. She thinks I should wait until I'm well rather than jumping back in just because I don't feel really unwell. 

    I saw our medical officer at work today and explained that I was keen to get back to work. He said we'll see how I feel in a months time.

    So, I've gone from being the only one who actually thought I was really ill (before being diagnosed) to the only one who thinks I'm recovering!

    i actually think I'll be back at work at the end of April, my management team have already agreed to move me to a post nearer to my home as I was driving long distances just to get to work and when I do go back it will just be for a few hours to start with.

    At the moment I am feeling ok when I exercise and then feeling exhausted some hours afterwards.

    Our bodies have been put through some fairly major trauma and we need to give them time to recover.

    Keep smiling though - we owe it to our loved ones to be here for years to come smile

  • Jimmyb5374
    Jimmyb5374

    Posted

    Thank you all for your advice , I think we need to find a way to share this forum eg through a Facebook link or something , I have gotten more help and advice from here than my doctors and probably more practical help than the consultants gave me !

    There seems to be little advice online other than go steady take your meds and be grateful you are alive .

    Thanks to you all again , feeling totally useless today but re reading the threads on here is giving me a bit of a lift and clearing my head so I can focus !

    James

    • peter54321
      peter54321 Jimmyb5374

      Posted

      Hey James,

      Glad you're not feeling useless anymore.....bad idea that one and I sure far from the truth. You are very early days yet and a couple of weeks of daytime TV will have you running marathons just to get away!

      You have a point about there being very little information and follow up for PEs. I am at 6 months on and have found very little except people on here. Took me a while to find my way here and those two months were tough...not knowing anything really sucks.

      I agree it would be good to spread information and help further afield.....always thought face to face would be brilliant, but fear we are spread too thinly geographically. Facebook wouldn't work for me..detest t and if history is any predictor, it won't last.

      If you fancy setting something in motion though - I'm in.

      Hope you have a good weekend.

      Peter

  • Jimmyb5374
    Jimmyb5374

    Posted

    Bit of a wobble yesterday , back to hospital with chest and neck pains , got a bit stressed / worried . 5 hours later and 4 blood tests ecg and d dimer done all clear , d dimer still over 800 but apparently that's fine due to situation . Pains still there this morning but diminishing slowly , so I guess I was a bit too sensitive !! Thing is without any knowledge I guess I am better to be overly cautious ??

    How does or did everyone cope with the aches and pains ? Trips to hospital or just grin and bear it ?

    Thank you all

    James

    • Allexie
      Allexie Jimmyb5374

      Posted

      Hi James

      A similar thing happened with me!  About 3 weeks after release from hospital the chest pains and leg soreness got worse and I went to A & E in a panic.  The usual blood tests, ECG, chest x ray etc showed little of concern but I was kept in overnight anyhoo.  Was made to feel I was making a big fuss over nothing tho.  Now I just don't know what to do when the pains get worse.  For the last year I have just put up with it and fortunately they have eased over time.  The fear that next time it may be 'it' doesn't lessen though.

      Best wishes

      Alex x

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